How Much Care Needed

Pumakitty

Hi,

I know I have asked the question already, but I would like some more input. My dad will soon be starting his treatment for IV base tongue cancer. I work 2-10 at night and am worried about being able to care for him. My mom is home and able to do some things, but can not drive. I am trying to plan if I will need to be off work for an extened period of time or just days here and there. The questions I have are:

Were you able to drive yourself to chemo and rad through the whole treatment time?

How much help did you need to do daily activites like eating, bathing and normal things?

Did most of you feel like doing things around the house or did you spend most of your time resting and sleeping?

My dad does not work, but loves to go to the grocery store, drive and do things around the house. I am worried that he will not be able to do these things and that will cause him to get very depressed.

Also, did you lose your voice?


Thank you again and I am sorry for all of the questions. Since it is just my mom and I to get through this with him I kinda want to know what to expect.

So far he is very postive about everything and very healthy other then this.

Kent Cass

Some answers
1) The driving depends on the side-effects, mostly, and that is directly tied to the treatment regime, and how he weathers the storm over the long haul. For me, I did drive myself the first six days, but things had gone south for me kinda fast, and morphine came into the picture. Did drive myself a couple more days in the middle, and also the last 2 1/2 weeks of just getting rads. ALSO depends on how far he has to drive, to and from, and typical traffic conditions.


2) Needed no help with the daily activities you mention.
Make sure he realizes that needing the meds to deal with this is entirely okay. And make darned-sure the Drs. are aware of how he is dealing with everything- C Drs. are well-aware of the battle it is, and usually do a great job of making sure Patients get thru the times of pain and misery okay. Your Dad might not wanna show weakness- but that weakness is being real. It is a major battle for the body and mind, Puma. It is my opinion that the pain and misery should be treated aggressively, because the body has enough to deal with- and does not need any more stress is possible to eliminate- pain does stress the body in a number of mental and physical ways. Keep a close eye on how he is managing the pain and misery, Puma.

3) Voice became a whisper for around 5 weeks.

4) As for the sleeping: some depends on the meds, of course, but every afternoon I took a nap, and a good night's sleep just didn't happen. I was doing good to get 3 1/2-hours sleep, but got used to it. The treatment does sap one of a lotta energy- the body is having to deal with a lot, you know.



Puma, your Dad's battle will be somewhat of a load on you and your Mom, but try to keep the positive perspective as the only mindset in play. May come a few times when you have to let his words bounce-off you- it will be the C speaking those words, Puma, not your Dad. Holding his hand now and then just might be what will help that scene. Be advised: the post-Chemo days can be the roughest.

The time before you is is historic to you and your family, Puma. He's not the only one that has to fight the good fight- you and your Mom are essential in his winning this battle. Down the road, you will look back on this time with recognition of how important it was to all of you. Trust me- you and your Mom will live-up to the tasks at hand. That ability is ingrained within us all. Just let yourselves go with the daily flow, and discover what you really are capable of accomplishing. It will amaze you.

And know that all of our Hopes and Prayers are with you three, Puma.

Believe

kcass

Hondo

Kent Cass said:

Some answers
1) The driving depends on the side-effects, mostly, and that is directly tied to the treatment regime, and how he weathers the storm over the long haul. For me, I did drive myself the first six days, but things had gone south for me kinda fast, and morphine came into the picture. Did drive myself a couple more days in the middle, and also the last 2 1/2 weeks of just getting rads. ALSO depends on how far he has to drive, to and from, and typical traffic conditions.


2) Needed no help with the daily activities you mention.
Make sure he realizes that needing the meds to deal with this is entirely okay. And make darned-sure the Drs. are aware of how he is dealing with everything- C Drs. are well-aware of the battle it is, and usually do a great job of making sure Patients get thru the times of pain and misery okay. Your Dad might not wanna show weakness- but that weakness is being real. It is a major battle for the body and mind, Puma. It is my opinion that the pain and misery should be treated aggressively, because the body has enough to deal with- and does not need any more stress is possible to eliminate- pain does stress the body in a number of mental and physical ways. Keep a close eye on how he is managing the pain and misery, Puma.

3) Voice became a whisper for around 5 weeks.

4) As for the sleeping: some depends on the meds, of course, but every afternoon I took a nap, and a good night's sleep just didn't happen. I was doing good to get 3 1/2-hours sleep, but got used to it. The treatment does sap one of a lotta energy- the body is having to deal with a lot, you know.



Puma, your Dad's battle will be somewhat of a load on you and your Mom, but try to keep the positive perspective as the only mindset in play. May come a few times when you have to let his words bounce-off you- it will be the C speaking those words, Puma, not your Dad. Holding his hand now and then just might be what will help that scene. Be advised: the post-Chemo days can be the roughest.

The time before you is is historic to you and your family, Puma. He's not the only one that has to fight the good fight- you and your Mom are essential in his winning this battle. Down the road, you will look back on this time with recognition of how important it was to all of you. Trust me- you and your Mom will live-up to the tasks at hand. That ability is ingrained within us all. Just let yourselves go with the daily flow, and discover what you really are capable of accomplishing. It will amaze you.

And know that all of our Hopes and Prayers are with you three, Puma.

Believe

kcass

Hi Puma

I was able to drive my self to and from radiation treatment everyday with no problems but not so with the Chemo, my wife had to be with me as the after side affects would not allow me to do much more then sleep all that day.

Kent offers some good advice that it is not only your dad but you and your mom who are essential to him in winning the battle.

Take care

Hal61

Driving and sleeping
Hi Puma,

I was able to drive myself to and from treatments and appointments throughout. I had three chemo treatments and seven weeks (35 treatments) of radiation. I'm a week and half out of my last radiation and my mouth and throat are starting to feel better--don't want to celebrate too soon.

My worst days came two to three days after each chemo treatment, and my last treatment caused a two-night hospital stay to keep hydrated. The nausea was bad as the pain in those cases. Unlike Kent, I was--and am still able--to get full sleep. During the days I just read, watch tv, sleep, and try and get the needed can amount into the peg tube.

I took sleeping meds to make sure I got to sleep, and paing meds to make sure I didn't add to depression battle, a little being natural. I was given liquid morphine after my hospital stay, but found the pills (vicodin) prescibed earlier in process to work better for me even after getting home from hospital.

Sounds like you are asking good questions, and I know you are getting good answers from the people here. They were, and still do, get me through. Very best to your father and mother, and yourself.

Hal

Fire34

Hal61 said:

Driving and sleeping
Hi Puma,

I was able to drive myself to and from treatments and appointments throughout. I had three chemo treatments and seven weeks (35 treatments) of radiation. I'm a week and half out of my last radiation and my mouth and throat are starting to feel better--don't want to celebrate too soon.

My worst days came two to three days after each chemo treatment, and my last treatment caused a two-night hospital stay to keep hydrated. The nausea was bad as the pain in those cases. Unlike Kent, I was--and am still able--to get full sleep. During the days I just read, watch tv, sleep, and try and get the needed can amount into the peg tube.

I took sleeping meds to make sure I got to sleep, and paing meds to make sure I didn't add to depression battle, a little being natural. I was given liquid morphine after my hospital stay, but found the pills (vicodin) prescibed earlier in process to work better for me even after getting home from hospital.

Sounds like you are asking good questions, and I know you are getting good answers from the people here. They were, and still do, get me through. Very best to your father and mother, and yourself.

Hal

Driving & Sleeping ?
Hello Puma
I was unable to drive at all during my treatment. During my induction chemo I was fatigued from the start and had bad side effects from mine. After induction I was then inpatient during concurrent chemo/rad.
During my treatment I needed sleeping pills(Ambien) to get even just a few hours sleep.
Is your Dad doing just weekly chemo? Coming home with a pump etc? I dont know where you are from but, Home health care might be an option to take the load off of you, it worked for me & my brother when my mom had her cancer
Hopes & Prayers
Dave

soccerfreaks

driving
First, it is great that dad remains positive: that is an essential element of recovery, as his doctors would almost certainly agree with.

Second, your dad is fortunate to have such support, another key element in successful recovery.

To your questions, you have heard of some experiences from others, and while a short sample, you have seen pretty much the gamut from 'yes i could drive' to 'not a chance'. This is due to a number of factors including the nature of the cancer, the nature of the treatment, and the disposition and tolerance of the patient.

Because I was going to chemotherapy and radiation immediately following surgery, I was still on some heavy duty pain meds, so driving was out of the question. Even if that is not the case for dad, consider whether he needs meds prior to rads: I needed a small hit of valium before getting into the mask. And as another respondent indicated, he/she was fatigued by the treatment.

I would advise that you and dad look for support if transportation is a problem so that it is no longer a problem. Find friends and family and church members (if you are so inclined) who can help with these duties. I had soccer moms and other friends volunteer to take me to rads and to wait for me and to take me home, for instance. If dad is not a particularly friendly guy (that happens ), check with the church, or check with ACS. Learn about local groups that have been established in someone's memory who do this routinely. It is not a handout: they feel good when they help and dad will make new friends.

Otherwise, you can generally schedule dad's treatments for times when you can be available. It is not THAT hard to do. If you work until 10, you can make a 10AM appt if you are so inclined.

Your concerns about dad's mental state are right on, in my estimation. He should definitely get out and about if and as he can (although he might need to limit sunshine at the moment). I would suggest, as trying for your life as it might sound, that you assign a day for dad, a few hours with dad, every Wednesday, let's say. On Wednesday, you pick up dad and you two do the groceries, you take him to the shops he wants to go to. It may be a little early for that, but it is something to consider.

Best wishes to dad and his family.

Take care,

Joe

Pumakitty

soccerfreaks said:

driving
First, it is great that dad remains positive: that is an essential element of recovery, as his doctors would almost certainly agree with.

Second, your dad is fortunate to have such support, another key element in successful recovery.

To your questions, you have heard of some experiences from others, and while a short sample, you have seen pretty much the gamut from 'yes i could drive' to 'not a chance'. This is due to a number of factors including the nature of the cancer, the nature of the treatment, and the disposition and tolerance of the patient.

Because I was going to chemotherapy and radiation immediately following surgery, I was still on some heavy duty pain meds, so driving was out of the question. Even if that is not the case for dad, consider whether he needs meds prior to rads: I needed a small hit of valium before getting into the mask. And as another respondent indicated, he/she was fatigued by the treatment.

I would advise that you and dad look for support if transportation is a problem so that it is no longer a problem. Find friends and family and church members (if you are so inclined) who can help with these duties. I had soccer moms and other friends volunteer to take me to rads and to wait for me and to take me home, for instance. If dad is not a particularly friendly guy (that happens ), check with the church, or check with ACS. Learn about local groups that have been established in someone's memory who do this routinely. It is not a handout: they feel good when they help and dad will make new friends.

Otherwise, you can generally schedule dad's treatments for times when you can be available. It is not THAT hard to do. If you work until 10, you can make a 10AM appt if you are so inclined.

Your concerns about dad's mental state are right on, in my estimation. He should definitely get out and about if and as he can (although he might need to limit sunshine at the moment). I would suggest, as trying for your life as it might sound, that you assign a day for dad, a few hours with dad, every Wednesday, let's say. On Wednesday, you pick up dad and you two do the groceries, you take him to the shops he wants to go to. It may be a little early for that, but it is something to consider.

Best wishes to dad and his family.

Take care,

Joe

Joe
Thank you. The good thing is that my mom and dad live with me and for the most part we do most things together. I am worried about the pain and being dependent on others will bring him down.

Pumakitty

Hondo said:

Hi Puma

I was able to drive my self to and from radiation treatment everyday with no problems but not so with the Chemo, my wife had to be with me as the after side affects would not allow me to do much more then sleep all that day.

Kent offers some good advice that it is not only your dad but you and your mom who are essential to him in winning the battle.

Take care

Thank you
I worry that my dad will become depressed needed a lot of help. What also worries me if leaving him and my mom by theirself while I am at work at night. I will be able to take him to Chemo those days, but it is other days that worry. I am almost sure that I can work his appointments around so that I can take him to rads. Where you sick for days after Chemo. And how strong of pain medicine were you on. We will find out more about his treatment schedule this coming week. Did you have induction Chemo. And have you been in the hospitol any during your treatment.

Pumakitty

Kent Cass said:

Some answers
1) The driving depends on the side-effects, mostly, and that is directly tied to the treatment regime, and how he weathers the storm over the long haul. For me, I did drive myself the first six days, but things had gone south for me kinda fast, and morphine came into the picture. Did drive myself a couple more days in the middle, and also the last 2 1/2 weeks of just getting rads. ALSO depends on how far he has to drive, to and from, and typical traffic conditions.


2) Needed no help with the daily activities you mention.
Make sure he realizes that needing the meds to deal with this is entirely okay. And make darned-sure the Drs. are aware of how he is dealing with everything- C Drs. are well-aware of the battle it is, and usually do a great job of making sure Patients get thru the times of pain and misery okay. Your Dad might not wanna show weakness- but that weakness is being real. It is a major battle for the body and mind, Puma. It is my opinion that the pain and misery should be treated aggressively, because the body has enough to deal with- and does not need any more stress is possible to eliminate- pain does stress the body in a number of mental and physical ways. Keep a close eye on how he is managing the pain and misery, Puma.

3) Voice became a whisper for around 5 weeks.

4) As for the sleeping: some depends on the meds, of course, but every afternoon I took a nap, and a good night's sleep just didn't happen. I was doing good to get 3 1/2-hours sleep, but got used to it. The treatment does sap one of a lotta energy- the body is having to deal with a lot, you know.



Puma, your Dad's battle will be somewhat of a load on you and your Mom, but try to keep the positive perspective as the only mindset in play. May come a few times when you have to let his words bounce-off you- it will be the C speaking those words, Puma, not your Dad. Holding his hand now and then just might be what will help that scene. Be advised: the post-Chemo days can be the roughest.

The time before you is is historic to you and your family, Puma. He's not the only one that has to fight the good fight- you and your Mom are essential in his winning this battle. Down the road, you will look back on this time with recognition of how important it was to all of you. Trust me- you and your Mom will live-up to the tasks at hand. That ability is ingrained within us all. Just let yourselves go with the daily flow, and discover what you really are capable of accomplishing. It will amaze you.

And know that all of our Hopes and Prayers are with you three, Puma.

Believe

kcass

Thank you Kent
Kent,

Thank you for answering my questions in so much detail. I am more worried about leaving him with just my mom to care for him. My boss is great so I think I can get him to treatments in the mornings. I work at a college and do the 2-10 shift. Like I said my mom is in good health but, recoving from a broken breast bone (this was a very weird accident) and is limited in what she can do physically. We have no close family that would help us with daily care or to stay with them while I work. I guess I am one that thinks the worse is going to happen. I am so worried that I get myself on the verge of a panic attack. I am so afraid that the PET scan is going to show that is has spread someplace else. I think once the treatment starts I will relax a little.

Kent Cass

Pumakitty said:

Joe
Thank you. The good thing is that my mom and dad live with me and for the most part we do most things together. I am worried about the pain and being dependent on others will bring him down.

A good point
Joe mentioned something, Puma, that I found very helpful. The Mask experience is not a good one, and most of us realize that as undeniable fact. My sessions lasted some 25-minutes, with getting zapped in 20 places. The first couple weeks were rough, and they had to stop/pause a session at the end of the first week, due to saliva build-up problems I was having. It can be stressful. Dr. started me on liquid Morphine early in the 2nd-week, and I tried that twice before a rad session, without favorable results. So, I tried doing a 1/2-tab of Xanax about 1/2-hour before the rad session- AND IT HELPED A LOT- BIGTIME. Joe used Valium, but with me it was Xanax- either one might help him.

Of note that I hope you will remember. I found that if I held my teeth in an overbite position, with my lips open to get air thru my mouth during the sessions, it made the experience much easier. We all have to deal with the Mask, Puma, and it is not an easy thing to deal with. If your Dad says he's having problems with it- we all struggled with it, so it is not unusual.

You three continue in my Prayers.

Believe

kcass

D Lewis

Notes from halfway through the process
Hi Pumakitty;

Posted to you on another thread, but here is some more information. I also have IV Base of Tongue, owing to the fact that the lymph nodes on BOTH sides of my neck lit up. 38 days of Radiation, of which I am now at day 17. Three rounds of chemo, of which I have completed two.

Your Dad's doctors may be able to offer some flexibility with regard to treatment times and schedules, to best help you out. Please ask, and explain why. At our hospital, radation treatments can be taken as early as 7:00 am. With the right treatment schedule, you may be able to transport your dad, and minimize work missed.

So far, I have driven myself to the radiation treatments. I have had family drive me to my chemo treatments (six total), because I am a whiney wuss during those, and because the anti-nausea meds cause fatigue and blurred vision. Radiation treatments last 20 minutes. For the longer chemo treatments (6 hours), my ride drops me off, and comes back later to get me. I can feed myself, bathe and do simple chores around the house. I also enjoy naps, or curling up with a good book. At start of week 4 the doc has noticed a drop in my white blood cell count, and I am less willing to do things that will expose me to germs, like shopping (think dirty shopping cart handles), gassing up the car, taking out trash, and cleaning up after pets. You might encourage your Dad to stay away from these.

So far, week 4, I still have a voice. I also have a tongue that seems to be the size of a hound dog's, and I am speaking less clearly. Family only mocks me sometimes, and I try to avoid answering the phone, as someone always wants to engage me in a conversation. Helps to carry water everywhere and sip it continuously.

As in my other post, things can change in a day. Good Luck.

Deb

soccerfreaks

Pumakitty said:

Joe
Thank you. The good thing is that my mom and dad live with me and for the most part we do most things together. I am worried about the pain and being dependent on others will bring him down.

ah
All I can add to the advice of others, then, is that if you are to be a good care giver, you must take good care of the giver.

Since dad lives with you, you probably feel compelled to take on his care all by yourself, or so this post seems to indicate. It can be a physical and emotional burden over time, as you are as likely as not to discover, so I say again that you might want to consider avenues for helping with his care, siblings, friends, and so on.

In any event, be sure to make time for yourself away from dad on occasion, as cold as that may sound. Even cancer survivors do not want to live with their cancer full-time.

Take care,

Joe

Pumakitty

D Lewis said:

Notes from halfway through the process
Hi Pumakitty;

Posted to you on another thread, but here is some more information. I also have IV Base of Tongue, owing to the fact that the lymph nodes on BOTH sides of my neck lit up. 38 days of Radiation, of which I am now at day 17. Three rounds of chemo, of which I have completed two.

Your Dad's doctors may be able to offer some flexibility with regard to treatment times and schedules, to best help you out. Please ask, and explain why. At our hospital, radation treatments can be taken as early as 7:00 am. With the right treatment schedule, you may be able to transport your dad, and minimize work missed.

So far, I have driven myself to the radiation treatments. I have had family drive me to my chemo treatments (six total), because I am a whiney wuss during those, and because the anti-nausea meds cause fatigue and blurred vision. Radiation treatments last 20 minutes. For the longer chemo treatments (6 hours), my ride drops me off, and comes back later to get me. I can feed myself, bathe and do simple chores around the house. I also enjoy naps, or curling up with a good book. At start of week 4 the doc has noticed a drop in my white blood cell count, and I am less willing to do things that will expose me to germs, like shopping (think dirty shopping cart handles), gassing up the car, taking out trash, and cleaning up after pets. You might encourage your Dad to stay away from these.

So far, week 4, I still have a voice. I also have a tongue that seems to be the size of a hound dog's, and I am speaking less clearly. Family only mocks me sometimes, and I try to avoid answering the phone, as someone always wants to engage me in a conversation. Helps to carry water everywhere and sip it continuously.

As in my other post, things can change in a day. Good Luck.

Deb

Deb
Thank you! These answered a lot of my questions. I would never had thought about the germ thing. I will keep that in mind. I wish you all the best. How is the Chemo making you feel?

Please take care of yourself and I hope to hear from you soon.